Decision-Making Models in Pediatric Psychiatry: Whose Voice is Louder?

Transcription

1 Decision-Making Models in Pediatric Psychiatry: Whose Voice is Louder? ANDRA RAISA PETCA 1 ABSTRACT: Westernized models of decision-making in medicine advocate for an egalitarian relationship between the medical professional and the patient, which is often referred to as client. Literature suggests a trend in replacing the paternalistic model with the shared decision-making one, thus moving from the physician being the expert and sole decision-maker while the patient has a passive sick role status to a bilateral information exchange in which the medical professional and the client weigh options together and agree on a decision of treatment and management of illness. While this transition is feasible in most medical settings, the shared decision-making process seems a utopia in pediatric psychiatry. Legal constraints change the bipartite relationship between patient and physician into a tripartite relationship that also involves the parent. Moreover, issues about the minor s decision-making competence arise, as the patient might only be able to give his assent rather than informed consent for any proposed treatment. Additionally, the physician has the challenging responsibility of mediating between the voice of the child and the parent when conflicting views appear. Lastly, the decision-making process often occurs in stressful circumstances characterized by a paucity of information and an unclear psychopathology, in an environment compelled to foster evidence-based practice and to consider urgency and vulnerability matters. The complexity of the therapeutic team creates the need to integrate various specialist opinions in decision-making. The current paper discusses the challenges of decision-making in pediatric psychiatry and suggests the professional as the agent decision-making model as being a viable alternative to the paternalistic model. Key words: decision-making models in medicine, pediatric psychiatry, parents informed consent, minor s assent 1 MSc. Clinical and Abnormal Psychology, Institute of Health and Society, University of Worcester, UK

2 REZUMAT: Modelele decizionale occidentale în medicină susţin o relaţie egalitară între cadrul medical şi pacient, care este adesea menţionat drept client. Literatura de specialitate sugerează o tendinţă de înlocuire a modelului paternalist cu cel al deciziei impărtăşite, trecând deci de la medicul ca expert şi singur hotărator şi pacientul cu simplu statut pasiv de bolnav, la un schimb de informaţii bilateral în care medicul şi clientul cântăresc împreună opţiunile şi convin asupra unei decizii de tratament şi de gestionare a bolii. În timp ce această tranziţie este posibilă în majoritatea mediilor medicale, procesul deciziei impărtăşite pare o utopie în psihiatrie pediatrică. Constrângeri de ordin juridic schimbă relaţia bilaterală dintre pacient şi medic într-o relaţie tripartită care implică, de asemenea, şi părintele. În plus, apar controverse despre competenţa decizională a minorului, ţinând cont că pacientul ar putea fi în măsură să-şi dea doar asentimentul, mai degrabă decât consimţământul informat pentru orice tratament propus. De asemenea, medicul are responsabilitatea dificilă de a fi mediator între vocea copilului şi a părintelui atunci când apar opinii contradictorii. În sfârşit, procesul decisional apare adesea în situaţii stresante caracterizate printr-o lipsă de informaţii şi o psihopatologie neclară, într-un mediu constrâns să încurajeze practica bazată pe dovezi şi să ia în considerare aspecte legate de urgenţă şi vulnerabilitate. Complexitatea echipei terapeutice creează nevoia de a integra diverse opinii de specialitate în procesul decizional. Lucrarea actuală discută provocările procesului decizional în psihiatria pediatrică şi sugerează modelul profesionistului ca agent drept o alternativă viabilă la modelul paternalist. Cuvinte cheie: modele decizionale în medicină, psihiatrie pediatrică, consimţământul informat al părintelui, asentimentul minorului. INTRODUCTION In today s medical context, sickness is no longer temporary, but, in most cases, it is a long-term chronic illness. Being extended for a long period of time, the illness becomes part of the identity and status of the patient. Moreover, the relationship between the patient and health care professional is long term. Therefore, the medical field deals with management of illness rather than with curing disease. This shift towards a more complex array of medical assistance

3 has transformed medicine in an industry of services (Charles, Gafni & Whelan, 1997). Just like other service providers, the medical field has acquired several norms and regulations that now govern its functioning. Firstly, the ethical norms entail that the patient gives his informed consent and is able to make an informed choice about the treatment and therapies that pertain to him/her. As a consumer, the patient has the right to autonomy and control, as well as the right to challenge the health care professional s authority (Charles, Gafni & Whelan, 1999). Moreover, in this context, the patient has even acquired the name and status of client. MAIN DECISION-MAKING MODELS IN MEDICINE Along with the aforementioned changes, decision-making in medicine has altered as well. If in the past, the paternalistic model was the gold standard, today, especially in the westernized world, the shared decision-making model is considered to be most appropriate for the current conditions (Charles, Gafni & Whelan, 1997, 1999). In the paternalistic model, the patient assumes a passive role in decision-making and has a sick role status that entails the right to excuse him/herself from family and work related activities and duties to try to get well, to seek expert help and to conform to medical recommendations. The health care professional is the authority figure, the expert who possesses the information and ability to evaluate, to diagnose, to recommend tests and who encourages the patient to give his/her consent to the medical opinion of what the best solution is. The information flow is unidirectional (from health care professional to patient) and contains only the minimum medical information required by law. The participants in the deliberation process are the health care professional with or without his/her therapeutic team, while the professional is the sole decision maker. The shared decision-making model represents a completely different approach from the paternalistic model, which nowadays is considered outdated for chronic cases. The patient has an active role in the decision-making process: he/she asks questions, evaluates alternatives and formulates treatment preferences. The health care professional creates a comfortable environment in which the patient feels that his/her opinions are valued, provides treatment options that are congruent with the patient s life style and values and helps the patient weigh treatment alternatives by offering pertinent essentials. The information flow is bidirectional and

4 contains all medical (from the professional) and personal (from the patient) data necessary in order to make a decision. The deliberation involves the client, the health care professional and possibly third parties on behalf of the patient. The decision is then reached between the former two. THE WORLD OF CHILD AND ADOLESCENT PSYCHIATRY Switching from a decision-making model where the health care professional is the expert and the client is passive to a model that implies collaboration between the two and that encourages the active participation of the client in the decision-making process may be possible in most areas of medicine. Nevertheless, this transition is, at the very least, difficult in the pediatric psychiatry environment. 1) The parent There is a very important third party that is added to the decision-making model: the parent. His/her presence changes the relationship in the medical field from a bipartite relationship that involves the professional and the patient, into a tripartite one that includes the parent as well. The parent is an important figure because he/she is the legal representative of the child and has both the right and the responsibility to take any necessary decisions as a proxy. Furthermore, the mother or the father is, at least in theory, the most appropriate person to decide in the best interest of the minor because he/she has an emotional bond with the patient, possesses knowledge about the child and his/her situation and also, the parent s personal interest pertains to the future of the minor (Rachels, 1989). More importantly, the support and cooperation of the parent in the decision-making process is not only helpful but necessary in most situations, particularly because the parent is legally responsible to ensure the child s access to medical services when needed (McCabe, 1996). At a first sight, parental involvement and participation to the medical context surrounding the minor can represent a valuable asset. Nevertheless, there are some aspects that contribute negatively to the situation of a child or adolescent that faces a medical problem. Some parents still believe that they are the owners of their children, a belief that may determine them to make decisions that are not always agreed by or in the best interest of the child, especially when the parent-child relationship is problematic (Wynne, 1997).

5 Additionally, parents have the right to maintain the integrity (Goldstein et al., 1979) and the autonomy (Ross, 1998) of the family and make decisions that protect these rights above and beyond the best interest of the minor. 2) The Decision-Making Competence of the Minor A second problem of the medical context of child and adolescent psychiatry is represented by the decision-making competence of the minor. As mentioned above, one of the features of the medical industry of services is represented by the obligation of the health care professional to obtain the informed consent of the patient regarding all therapy or treatment procedures. The informed consent implies access to information about the risks and benefits of the treatment/therapy options, a voluntary decision and decision-making competence (Paul, 2004; McCabe, 1996). In order to fulfill the third criterion, one must be able to correctly evaluate the information that is received as well as to have the ability to infer and to employ abstract thinking, tasks that may be too difficult for a child or adolescent. In fact, the decision-making competence of children depends on two crucial aspects: (1) the social development and (2) the cognitive development (McCabe, 1996). The social development is important in determining the capacity to volunteer, a competence that is influenced by the conformity index and the relational style with the authority figure. Research shows that the maximum level of conformity appears at preadolescence (ages 10 to 13), while decision-making capacity is formed around midadolescence (Grisso & Vierling, 1978). Moreover, identity development, value stability as well as experience in decision-making have a great impact on the decision-making competence. Cognitive development has a role in the ability to understand the illness and the treatment situation (formal operational thinking) and is essential in understanding risks and benefits (abstract thinking). What is more, the capacity to make decisions in a medical context implies the ability to comprehend new information without previous experience, to evaluate hypothetical probabilities, to use inductive and deductive thinking processes and to employ superior attention functions i.e., focusing and flexibility. Developmental stages of neurotypical children clearly show that the abilities mentioned above in both the social and the cognitive domains are acquired progressively as the child gets closer to adulthood. This implies that, in most cases, minors do not have decision-making competence and thus they cannot offer an informed consent. Nonetheless, we need to respect the rights and the autonomy of every individual, regardless of

6 age (Kunin, 1997, p. 44). Consequently, in the case of minors, one could employ the concept of assent, which is considered the precursor of informed consent (Kuther, 2003). Assent implies that the child or adolescent client expresses his/her wish to undergo a specific treatment/therapy after the health care professional provides him/her with pertinent information about the patient s situation and the proposed solutions in a manner that is consistent with the child s comprehension abilities. The minor patient must not make very complex decisions such as choosing an entire therapeutic scheme, but he/she can be involved in the decision-making process by choosing whether to take certain medicine as a pill or as an injection, or by choosing the day of the week when he/she prefers to participate to psychological therapy. In this way, the child or adolescent is not given the burden of making crucial decisions but he/she is shown that his/her opinions and choices are valued. Using the concept of assent entails that the health care professional helps the minor to understand his situation and what is expected of him/her during the treatment/therapy, evaluates his/her grasp of the information provided and determines the minor s will to accept the proposed care. 3) The Need for Mediation A third issue to be considered in pediatric psychiatry is the need of the health care professional to mediate between the child and the parent (Paul, 2004). Giving adult rights to a child may hinder his/her wellbeing by undermining the family i.e., the mere environment in which the interests of the child can be maximized (Ross, 1989). On the other hand, interventions in psychiatric cases may involve taking away certain rights of the minor such as the right to privacy (e.g., the child/adolescent is compelled to discuss his problems with a psychologist) or the right to freedom (e.g., the patient needs to be hospitalized). Parents can also represent a problem when they are part of the context that enhances the development of child psychopathology or when they refuse essential treatment for the child. Hence, the question arises, what should be valued more: the interest of the child, the parent or the family? Albeit there is no correct answer to this inquiry, the responsibility of the health care professional is to conserve the minor s autonomy within the possible parameters, to avoid excessive influence from parents, to acknowledge the values and plans that the parents have for their children and to act in the best interest of the minor clients (Kuther, 2003).

7 4) The Complexity of the Medical Context The fourth problem of the psychiatric environment that deals with children and adolescents is the complexity of the context. Most cases involve difficult situations e.g., the patient s psychiatric problems are generally not accompanied by issues related to socioeconomic variables. The stress level of the professionals is quite high especially in settings that involve emergency cases. Most times, important information is deliberately not provided by either the parent or the patient due to various personal reasons, which bases intervention on an incomplete set of data. Confounding variables might hamper the ability to determine an exact diagnosis for certain categories of patients e.g., personality disorders in adolescents are difficult to diagnose because the youngsters are at the age when personality is in its full development. Additionally, the patients from pediatric psychiatry are double-vulnerable: firstly, they are minors and secondly, they have psychiatric/psychological problems. Lastly but equally important, the wide access to research and scientific information as well as legal requirements put pressure on the health care professional to employ evidence-based practice. 5) The Therapeutic Team On top of all the problems identified above, a fifth issue contributes to the specificity of the pediatric psychiatry environment: the therapeutic team. In Romania, the norms of application of the Law of mental health and protection of people with psychiatric disorders (no. 487/2002) postulate that the therapeutic team from the psychiatric sector for children and adolescents comprises of: (a) 4 psychiatrists, (b) 20 psychiatric nurses, (c) 2 clinical psychologists, (d) 3 psycho-pedagogs, (e) 3 social workers and (f) other staff (Article 14(2), 2006). Therefore, at a meeting at which various specialists from different areas participate in order to discuss the therapeutic scheme for a minor (see figure 1 below), an important question becomes evident: whose voice is louder? Whose opinion should be valued more: the one of the psychiatrist, the psychologist, the social worker, the parent? Perhaps one should start with the most important person: the minor him/herself. After all, it is his/her life that is being discussed at that meeting and it is his/her best interest that each professional wants to protect, although from different professional perspectives.

8 Figure 1: Whose Voice Is Louder? THE MINOR S PARTICIPATION IN DECISION-MAKING Involving the minor client in the decision-making process has several benefits (McCabe, 1996). It is a first step in preserving the autonomy of the patient. Moreover, effective communication with the minor increases patient satisfaction which, in turn, enhances adherence to treatment or therapy. Involving the child or adolescent in the process of establishment of treatment/therapy objectives facilitates cooperation. The perceived control of the child/adolescent of his/her own situation increases positive adaptation at a significant level. What is more, involving the minor client in decision-making is a way of showing respect for the child s capacities and of providing opportunities for future development and acquisition of decision-making skills. Although, as presented above, patient involvement has various advantages, it should be done in moderation. At the United Nations Convention pertaining to the children s rights, it was stipulated that providers of health services are mandated to offer the minor all necessary information in order to ensure his/her participation in all decision-making processes that have relevance to his/her situation, but this does not mean that the minor is the decision-maker (Landsdrown, 2000).

9 THE PROPOSED SOLUTION FOR DECISION-MAKING IN PEDIATRIC PSYCHIATRY Despite the advancement in decision-making models in medicine, replacing the paternalistic decision-making model with the shared decision-making model is not feasible in the child and adolescent psychiatry environment. As shown above, this setting possesses various problems such as the presence of the parent, the impaired decision-making competence of the minor client, the need for mediation between the parent and the child, the complexity of the medical context and the diversity of professional perspectives within the therapeutic schemes. Nevertheless, despite these significant predicaments, offering the underage patient an opportunity to somehow participate in the decision-making process reveals important benefits. Thus, in pediatric psychiatry, perhaps a viable alternative to the shared decision-making model is the professional as agent model. This approach postulates that the patient has a passive role in making the final decision (but not in the other stages i.e., information sharing and deliberation) while the health care professional is the agent trying to choose what the patient would have chosen had she been as well-informed as the professional (Evans, 1984, p. 75). A key component of this model is the idea that the professional knows what the wishes and preferences of the patient are (Charles, Gafni & Whelan, 1997, 1999). Consequently, because, despite the vast expertise, the health care professional cannot be a mind-reader, consulting the patient is vital in ensuring a correct decision (i.e., congruent to the patient s values and wishes) on behalf of the child/adolescent. In conclusion, while employing a shared-decision making model in child and adolescent psychiatry seems a utopia given the problematic medical context, using various methods such as obtaining assent and involving the patient in the preliminary stages of reaching the final decision (i.e., information sharing and deliberation) allows for the possibility of employing at least the second best decision-making approach: the professional as agent model. References:

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